Creating patient-centred infrastructures to enhance informed consent and improve patient experience of radiotherapy for gynaecological cancers

Research Question: How could health services better support people to make decisions to consent for gynae-radiotherapy to improve psychosocial wellbeing and quality of life?

Background: Survival benefits of gynaecological (gynae) radiotherapy are clear and radiotherapy is now considered essential in gynae cancer management (1). However, survival often comes at a cost, with patients suffering acute and long-term physical, emotional and psychological effects of treatment, significantly impacting quality of life (2–5). Treatment induced morbidities are often underestimated and under reported making fully informed consent before treatment impossible.

People who do not consent to treatment tend to be from typically disadvantaged groups resulting in poorer outcomes (6,7). People with lived experience of gynae-radiotherapy describe how treatment effects are significant, being uninformed in their decisions to consent and the minimising of effects by clinical teams (8,9). Despite successive policies emphasising patient-centred care (10), patient shaped services and involvement in decision-making about care (11,12), integration of patient preferences in NHS services has been sub-optimal (10).

Implementation of enhanced information to support consent requires an understanding of patient experience and changes to service delivery structures to overcome barriers to adoption (18) and more needs to be done to support inclusivity of resources for supporting consent (19). Aim:

To understand the lived experience of people who have had gynae-radiotherapy to co-create decision support infrastructures that enhance informed consent and delivery of care to improve patient experience of physical effects, psychosocial wellbeing and quality of life. Methods & Objectives: Four theoretically interlinked work packages (WP):

WP1. Patient and Public Involvement (PPIE) to enhance patient and public understanding of radiotherapy and ensure the research is jointly owned to improve experience for future patients.

WP2. Understanding lived experience of people who consent to radiotherapy, those who decline treatment, carers and professionals involved in their care through interviews and focus groups.

WP3. Measuring trade-offs people are willing to make between long-term benefits and side-effects of gynae-radiotherapy using a discrete choice experiment and exploring disparity between stakeholders (patients, carers, healthcare professionals).

WP4. Synthesising outputs from WP1-3 to co-design consent infrastructures (policies, procedures and resources) that respond to patient preferences, needs, values, and contextual factors. Timeline: Months 1-3 study set up; months 1-30: WP1 and knowledge mobilisation; months 1-18 WP2 and 3; months 2-27 WP4.

Anticipated Impacts and Dissemination:

Co-producing infrastructures will improve delivery of care, with a positive impact on psychosocial wellbeing and quality of life. Drawing on the multidisciplinary expertise of the team, PPIE members and stakeholders, we will integrate dissemination throughout, share project updates via short videos, blog posts, social media, podcasts, and newsletters, as well as create reports, peer reviewed articles and conference presentations.